Summary:
One year ago, the U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation launched the $25-million-dollar LymeX Innovation Accelerator (LymeX) partnership. As this historic partnership celebrates accomplishments with a LymeX First Anniversary video, let’s see how LymeX is carrying momentum forward.
Lyme disease is complex, with approximately 476,000 U.S. cases each year. It is time to learn from the millions with lived experience and bring patient-driven innovation and research to the forefront of Lyme disease.
In the words of Admiral Rachel L. Levine, MD from the June 2021 Congressional Virtual Lyme Series, “My office is embracing transformative innovation, going big with the entire Biden administration to accelerate scientific breakthroughs in innovation with cross-cutting collaboration and partnerships." The LymeX public-private partnership includes Lyme patients at every step.
2021 LymeX Priorities
Our way forward involves a human-centered approach to engage diverse voices across all sectors and disciplines. From this foundation of human-centered and patient-centered methodologies, three priority themes emerged: (1) Patient-Centered Innovations; (2) Education and Awareness; and (3) Next-Generation Diagnostics.
Trust is paramount for making progress. LymeX includes consistently “showing up” to listen, learn, and create a safe space to focus on the next generation of solutions.
LymeX also uses “open innovation” for two-way communication in the open, like the LymeX.crowdicity.com crowdsourcing platform, to learn from the public in a transparent, community-driven manner.
2021 LymeX Highlights
Grounded in human-centered innovation, LymeX 2021 achievements include:
LymeX Human-Centered Design Workshops, Interviews, and Listening Sessions (January 2021 to present): Starting from the viewpoint of patient-centered innovation, the LymeX Health+ (“health plus”) team completed almost 700 hours of interviews, listening sessions, and workshops.
LymeX Request for Information (RFI) Accelerating Innovation in Diagnostic Testing for Lyme Disease (February 2021): We released an RFI to understand the current landscape and emerging technologies to improve Lyme disease diagnostics, receiving 32 responses from the public on how research and investments in rapidly developed COVID-19 diagnostics might be adapted or repurposed for Lyme and tick-borne diseases.
LymeX Roundtable: Bridging the Trust Gap (April 2021): More than 1,500 viewers watched the LymeX Roundtable Webinar featuring inclusive strategies and emerging technologies for tick-borne diseases. Afterward, approximately 70 participants — including patients, doctors, researchers, and policymakers — explored ways to improve cooperation and communication around Lyme disease.
Health+ Lyme Disease: Human-Centered Design Report (May 2021): This LymeX Health+ report amalgamates individual anecdotes and perspectives from Lyme patients, transforms them through qualitative and quantitative research into patient “archetypes” and collective “journeys” for Lyme diagnosis, treatment, persistent symptoms, and disability, and identifies opportunity areas with actionable recommendations for the future.
LymeX Roundtable: Bridging the Trust Gap Summary Report (June 2021): A neutral third-party organization summarized highlights from the April 2021 LymeX Roundtable and outlined 14 opportunities for a path forward using patient-driven innovation and patient-driven research.
LymeX Education and Awareness Healthathon (June to August 2021): This LymeX Healthathon (similar to a hackathon, but as a health-focused sprint) called on the public to create educational materials to raise awareness about tick-borne disease prevention and help others benefit from the latest scientific findings. Participants from all walks of life, including two winning K-12 innovators, helped lead by example with Lyme Innovation progress.
LymeX Research Workshop: Advancing Research for Lyme and Tickborne Diseases (October 2021): Building upon the LymeX Roundtable, this workshop invited 50 participants, including 17 Lyme patients and advocates, to share input on patient-driven research. A neutral third-party organization will synthesize discussions and publish online in late 2021.
LymeX Diagnostics “Moonshot” Prize Competition (in development, more to be announced late 2021): Through an interagency agreement with the NASA Center of Excellence for Collaborative Innovation, we are designing the first phase of a prize competition called the LymeX Diagnostics “Moonshot”. Following the KidneyX model, the Moonshot will be a multi-phased, multi-year, multi-million-dollar competition to develop diagnostics cleared by the Food and Drug Administration (FDA) for measuring active infection of Lyme-causing bacteria in the human body.
To stay informed and participate in upcoming LymeX events, please visit Lyme-X.org, follow @Lyme_X on Twitter, join LymeX.crowdicity.com, or email LymeInnovation@hhs.gov. We are looking forward to the next year!
